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When your life is affected by chronic pain, the search for solutions can make you feel desperate, alone and afraid. If the symptoms you are experiencing are due to interstitial cystitis (IC), we want you know that there is hope. Please click on one of the links below for information that you may find inspiring, educational or otherwise useful.
Meet real IC patients who have found relief
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I was diagnosed with interstitial cystitis when I was 21 years old, just before my senior year of college. I woke up early in the morning and I had the urgent need to urinate, and pain in my bladder. It felt like I had paper cuts that lined my bladder wall, and then urine would hit those paper cuts.
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I went to my gynecologist, which seemed reasonable because I thought it was a urinary tract infection. So we started on a course of antibiotics, but that didn't work at all. So I was sent to a neurologist, who ran several tests and couldn't find anything. And then finally I
did find a urologist who diagnosed me with interstitial cystitis.
So my onset of IC was quite severe. I would have to go to the bathroom as many as 40 to 50 to 60 times a day. And I would also have to go to the bathroom 40 to 50 to 60 times during the night.
But this was 18 years ago I was told, "This is what you have. But there's nothing we can do. You're just going to have to learn to live with it."
You never really learn to live with it. You're very stressed, you're very angry. You lose your personality. You just start to bury yourself and your pain and cut off friendships, cut off relationships. It's a real quality of life issue. Imagine you're in a three hour meeting, and you're the only one who has to leave the room every 15 minutes. Or you're out to dinner with friends and you're the only one leaving the table every 15 minutes.
Sex is extremely painful, so you cause arguments to avoid the intimacy. In my case, I was able to travel on the tour for 2 months at a time, just to avoid sex. My husband and I were high school sweethearts. If it weren't for that, I think he would have left me a long time ago.
Being on the LPGA tour is a childhood dream. It was what I always wanted to do. This dream was almost completely taken away from me because of interstitial cystitis. I mean, imagine trying to play golf on an elite athletic professional level and your only thought is, "Can I get to the bathroom?" And that's something that hurts when I think back to what could have been.
I didn't raise my daughter for the first 18 months. My husband was very much afraid to leave me in the same room with my daughter. Imagine the stress and anxiety of not sleeping for almost 12 years, the need to go to the bathroom and fighting that pain. An infant was the last thing that I could take care of. There's nothing IC doesn't touch in your life. Just to share this story. . . takes me back to devastating moments in my marriage. It's really, really tough.
I started a new treatment in 1996. And I can promise you this treatment did save my life. There's no question had I gone to another doctor and been told, "You're just going to have to learn to live with it," I wouldn't have learned to live with it. I couldn't live another 50 years in that kind of pain. I wouldn't be here today. I've been given a second chance at life.
When I started treatment, it took about 4 1/2 to 5 months before I noticed a change. About then, I noticed I was able to sleep—not 20 minutes at a time, but 2 hours. And then I could sleep through the night.
I was able to take airplane trips. I was able to play 18 holes of golf. I could take my daughter shopping for hours at a time without once wondering where the next bathroom would be.
I have a marriage again. You know, I have a fantastic relationship with my husband again. And I have my career back on the LPGA tour. I've been able to win several times. It's my 17th year on the tour, and. . .those young kids better watch out!
And I have a personality back, the personality I remember as a young adult. I have that laughter, that fun, that joy and spontaneity. Go somewhere? Sure, I can do that. Whereas before treatment, it was, "Am I going to be able to do this? Is the bathroom going to be close?"
Now, I sleep at night. And I just have a second chance at everything I love.
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I first experienced symptoms of interstitial cystitis when I was 42 years old and I was on my honeymoon, of all things. I had fairly severe perineal pain [pain in the area between the anus and the posterior part of the external genitalia], which would not go away. It was like someone was pinching me with a pair of pliers.
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When I got home, I went to the first of 4 urologists in an attempt to diagnose what was wrong with me. The first one did a cystoscopy. I was in this extreme pain, and I will never forget him saying to me, "Well, you were a little red in there, Mr. Stephens." And I thought, "A little red? Where is he coming from?"
Even though there was no infection, he put me on antibiotics. I remember wondering about that at the time. Of course, the medicine did nothing for my symptoms.
After about a year and a half, I had the first of 3 surgical procedures. My urologist was convinced I had benign prostate enlargement that was impinging on my urethra. The first surgery was a balloon-type angioplasty, which did nothing to relieve my symptoms. After about a year I had the first of 2 transurethral resections of the prostate. But again, after each surgical procedure there was no improvement in my symptoms.
At the depth of my illness, in addition to the pain, I was going to the bathroom about 25 times a day. And so my quality of life diminished by major proportions.
I bounced around to 2 more urologists. I was referred to a psychiatrist to treat me for sexual problems that I was experiencing with my wife. It was true that I was, in fact, experiencing sexual problems connected with this intense perineal pain, but he was trying to solve that by some kind of regimen that involved each partner touching each other. So I finally just decided that I had had enough of all that.
In the course of all this, my marriage did come to an end. It did really do a number on my sex life. And there was a considerable loss of sexual confidence.
Finally, I went back to the urologist who had performed the earlier surgeries. He told me he would go in, take another look at me, and see if he could figure out what was wrong. When I woke up in the recovery room, he told me I had interstitial cystitis. He took some pictures of the inside of my bladder and showed me the strictures along the bladder wall.
Of course, I had never heard of IC before.
Soon, I began a new treatment consisting of taking ELMIRON, Elavil and Wellbutrin. I would say it took about 6 months for me to experience an improvement. And it was very subtle at first, so you would wonder if you were making it up. But I'm glad that I stuck with the new treatment, because I am now about 85% improved. I wish I could get my symptoms to that last 100%, although I must say, I have never watched my diet, and perhaps that could have something to do with further improvement.
Now, I have a new girlfriend that means a whole lot to me. I can do anything I want to. I founded a new business in 1998, which is now Stephens Property Group, and that has been very demanding, but I'm pleased to say we made very good progress. IC used to cause me real problems flying on airplanes and taking long trips in cars. But those things are no problem today.
I feel very blessed to have recovered to the extent I have.
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The following organizations can provide additional information and support for those with interstitial cystitis:
110 North Washington Street, Suite 340
Rockville, MD 20850
Phone: 1-800-HELP-ICA (435-7422) or (301) 610-5300
Fax: (301) 610-5308
Web site: www.ichelp.org
P.O. Box 2159
Healdsburg, CA USA 95448
Phone:(707) 538-9442
Fax:(707) 538-9444
Web site: www.ic-network.com
1000 Corporate Boulevard
Suite 410
Linthicum, MD 21090
Phone: 1-800-828-7866 or (410) 689-3990
Web site: www.afud.org
2025 M Street NW.
Suite 800
Washington, DC 20036
Phone: (202) 367-1167
Fax: (202) 367-2167
Web site: http://www.augs.org
909 Northeast 43rd Street, Suite 306
Seattle, WA 98105-6020
Phone: (206) 547-6409
Web site: www.iasp-pain.org
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